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Incontinence Stories From Experts & Real People | NAFC BHealth Blog

Log in daily to learn tips about #incontinence, #bladder leakage, overcoming symptoms, and first hand accounts from experts and patients.

 

Ask The Expert: Should I Get Vaccinations If I Have IBD?

Sarah Jenkins

 Ask The Expert

Each month, we ask our expert panel to answer one of our reader's questions. To learn more about the NAFC Expert Panel, and how to submit your own question, see below.

Question: I suffer from IBD and have always thought that vaccines would place me at a greater risk for developing an infection due to an already compromised auto-immune system. Is this true?

Answer: Many patients with IBD believe that they should not get certain vaccinations because they are concerned about side effects, and think that the vaccines won’t benefit them. But the truth is, IBD already is placing patients at a greater risk for developing vaccine-preventable illnesses. This is even more true if you are on an immunosuppressive therapy. This is why it’s important to talk to your doctor about vaccinations to ensure that you’re getting the protection you need. 

Guidelines recommend vaccinating prior to starting immunosuppressive therapy, since the efficacy of the vaccine is higher in non-immunosuppressed IBD patients.

And while it is generally recommended that all adults with IBD receive non-live vaccines (in line with the national guidelines), certain live vaccines may not be recommended for some patients.

Talk to your doctor about the vaccines you need and determine a plan for getting up to date.

Are you an expert in incontinence care? Would you like to join the NAFC expert panel? Have a question you'd like answered? Contact us!

What Is Crohn's Disease?

Sarah Jenkins

 What Is Crohn's Disease?

Crohn’s Disease belongs to a group of conditions known as inflammatory bowel diseases (IBD). It is a chronic inflammatory condition that affects the lining of the digestive tract.  It’s a rare condition, affecting fewer than 200,000 people in the US per year.

Crohn’s Disease Symptoms

Some people with Crohn’s disease may go their whole life without experiencing symptoms, while others will experience many. And, since it is a chronic condition, there may be times when the disease causes a lot of symptoms, and times in remission when a patient may not notice symptoms at all. Some of the more common symptoms of Crohn’s disease include the following:

  • Painful cramping
  • Ongoing Diarrhea
  • Rectal bleeding
  • The urgent need to move your bowels
  • The feeling that you haven’t completely emptied your bowels
  • Constipation

Some people also experience additional symptoms, such as fever, loss of appetite, or weight loss.  It’s also very common for people with Crohn’s disease to feel a lack of energy and heavy fatigue.

Who Is At Risk For Crohn’s Disease?

Crohn’s disease strikes men and women equally, but it’s generally more prevalent in younger people (between the ages of 15 and 35).  And, if you have a family member who has the disease, you have an increased chance of having it yourself.

Certain regional and racial factors may also increase your chances of having the condition:  it’s more common in people with European backgrounds, and appears to occur more often in people living in developed countries, urban areas, or in northern climates.

Causes Of Crohn’s Disease

The causes of Crohn’s disease are not fully understood, but it is thought that it may be the result of a problem with a person’s immune system that leads to an inflammatory response. For instance, the immune system may be attacking the helpful bacteria that typically aid in digestion, and in turn cause an inflammation in the digestive system.  Or, the inflammatory response simply does not stop, as it should.

Diagnosis Of Crohn's Disease

Crohn’s disease can sometimes be difficult to diagnose due to the varying symptoms that a patient may develop. There is no one test to diagnose it, and often times a doctor will need to perform many tests, and rule out other conditions in order to arrive at a diagnosis of Crohn’s disease. Things like blood tests, colonoscopies, MRI’s, and endoscopies are often used to aid in diagnosis. And due to the hereditary nature of Crohn’s disease, your doctor will ask you about the history of the disease among your family members.

Crohn’s Disease Treatment Options

Crohn’s Disease is a chronic condition and doesn’t have a cure. But there are things that you can do to effectively manage the condition. Getting the condition under control is important, since serious complications, can occur when it is untreated.  These complications, such as ulcers, bowel obstruction, malnutrition, or even colon cancer can sometime be life threatening.

For many, diet and lifestyle changes can make a big difference. If that doesn’t work, there are number of different medications that have been shown to be effective against Crohn’s disease. Finally, the Crohn’s and Colitis Foundation of America estimate that about 70% of Crohn’s sufferers eventually will require surgery to treat their condition – something that is typically seen as a last resort when a patient stops responding to medication or diet and lifestyle changes.

Crohn’s disease is a life-long battle, but with the right treatment approach, it can be kept under control and symptoms can be minimized. Talk to your doctor if you suspect you may have Crohn’s disease so you can get a proper diagnosis and treatment plan.

Home Remedies For IBS

Sarah Jenkins

 Home Remedies For IBS

Irritable Bowel Syndrome, also commonly known as IBS, can cause symptoms such as painful cramps, bloating, excessive gas, diarrhea, and even constipation. For some people, the impact of IBS on daily living can be extensive and can negatively affect quality of life. But there are things that you can do to treat IBS naturally. And since it’s a chronic condition, it’s a good idea to learn some methods for keeping it in check and managing the symptoms.

There is no cure for IBS, but knowing what your triggers are, and how to avoid them, can greatly reduce your symptoms. Read below for some ideas on how to manage your IBS symptoms without medication.

Exercise.

Working out can help keep your digestive system working properly. It’s also a great way to relieve stress and anxiety, two big contributors to IBS symptoms. Exercising can be as easy as taking a short walk around your neighborhood. The key here is consistency, so aim for a 30-minutes, 4-5 times per week.

Diet.

What you eat when you have IBS can make a huge difference. Many people find that certain foods will cause them more problems, so try to avoid these when you can:

  •          Dairy products
  •          Spicy Foods
  •          Citrus Fruits
  •          Sugar
  •          Caffeine (including chocolate)
  •          Alcohol
  •          Soda
  •          Fried Foods
  •          Beans
  •          Broccoli or cauliflower

Watch How you Eat.

How you eat may be just as important as what you’re eating. Eating more slowly helps prevent you from swallowing too much air, which can cause excessive gas. And opting for smaller meals throughout your day can help you avoid overloading the digestive system, which can cause cramping and diarrhea.

Managing Stress.

Stress can be a big contributor to IBS so learning effective ways to manage it can really help to alleviate symptoms. Exercise, as mentioned above can be a great stress reliever. You can also try practicing mindfulness, which has been shown to reduce anxiety and stress in many people. Talking with a friend or a counselor about stressful situations can also do wonders to help you calm your mind.

Probiotics.

Probiotics are specific species and strains of bacteria that we eat which are thought to improve gut health. Its unknown exactly how these work, but by improving your “gut health”, you may also improve your IBS symptoms. Probiotics can be taken as supplements, and are also found in things like yogurt, kefir, kimchi, and Kombucha.

Go Easy On The Laxatives.

Many people turn towards OTC laxatives to manage their IBS symptoms, but be careful – improper use of these products can sometimes make things worse. Always talk with your doctor about how to integrate them into your treatment plan before trying them on your own.

The most important thing you can do is to pay attention to your body and how you’re feeling. Notice how certain foods affect you and try your best to avoid them. Recognize when you’re feeling stressed out and find ways to calm your mind down. With a bit of practice, you’ll be on your way to fewer IBS symptoms, and a better ability to manage them.

 

 

 

 

Practicing Mindfulness To Help Ease IBS Symptoms

Sarah Jenkins

Practicing Mindfulness.png

In today’s hectic and crazy world, it’s hard to even think about finding the time to just sit and practice mindfulness.  For many, it’s a hard concept to grasp, and as a practice, it can feel intimidating to start. But carving out even 5-10 minutes of each day for some quite time can do wonders for your stress and anxiety levels, and may even help with things like IBS symptoms, simply by calming your mind and being objectively aware of how you’re feeling.

Benefits of Mindfulness

Mindfulness has been practiced for thousands of years and is thought to have originated in Eastern cultures and religions.   Turns out that the ancient practitioners were on to something. Recent research has shown that mindfulness has many benefits, including the following: 

  • Reduced rumination
  • Reduced stress and decreased anxiety
  • Increased working memory capacity
  • Better ability to focus
  • Less emotional reactivity
  • Enhanced self-insight
  • Increased immune functioning
  • Improvements in well-being

What To Expect

Before you start practicing mindfulness, you need to know a bit about what to expect.  The main goal of mindfulness is to be able to pay attention to the present moment you’re in, without judgment. This sounds pretty easy, but once you get started you’ll see it’s much harder than it appears.

Your mind has a mind of it’s own and tends to drift toward all sorts of things except what’s happening to you right at this moment – that big work project coming up, the cupcakes you promised to make for your 3rd grader’s class this week, an upsetting conversation you had with a friend or family member, your growing to-do list, and on and on.

But not to fear – your wandering mind is completely normal and it just takes some practice pulling your thoughts back to the present moment once you realize they’ve drifted off. Once you’re able to this in practice, you’ll find you’re better able to do it in real life too, making you more present in your day-to-day activities.

How To Start

  • Find a comfortable place to practice.  This doesn’t have to be a picturesque seat in the middle of a garden or waterfall. It can be a comfortable chair in your kitchen, a quite spot outside, or even your desk chair in your office. The main thing is to find a place that feels good to you. Be sure that your body posture is comfortable too, and that you’re in a position that you can remain in for the length of your practice.
  • Start with 5-10 minutes. This feels like a small amount of time, but is a great place to start when you’re trying to fit this practice into your day. And when you’re just getting started, trust us when we say that even 5-10 minutes may feel like a long time to just sit still. As you continue with your practice, you can begin to extend your time.
  • Concentrate on your breathing. No need to count your breaths or hold it for a specific amount of time. Just feel your breath as you inhale and exhale slowly and regularly.
  • If you feel your mind start to wander (and you will), just acknowledge it and then pull your concentration back to your breath.
  • Don’t judge yourself or your feelings.  This is hard work, and takes practice to be able to continually be present and not focus on the things that are happening in our lives.
  • Practice makes perfect. Or at least it makes you better. With continued practice of mindfulness meditation, you’ll become much better at staying focused throughout and that will bleed into other areas of your life as well. We know it’s hard to sit still for a set time each day, but stay with it. The benefits are well worth it.

Need a little help getting started? Check out this guide to find some apps that can help you stay focused and guide you through your meditation practice.

What Is IBS?

Sarah Jenkins

What Is IBS_.png

We’ve all experienced bowel trouble at one time or another. But for some people, cramping, excess gas and loose stools (or not so loose stools) are all too common of an occurrence. If you suffer from these symptoms, you may have a condition called IBS, or Irritable Bowel Syndrome. IBS is a gastrointestinal disorder and is not the same as IBD (Irritable Bowel Disease), which is a more serious condition and can cause more severe complications.

Common Symptoms Of IBS

  • Abdominal pain or cramping (this goes away once you have a bowel movement)
  • Excess gas and bloating
  • Diarrhea, or constipation (sometimes people with IBS experience both)
  • Changes in stool consistency or frequency
  • Mucus in the stool
  • Loss of appetite

Causes And Triggers Of IBS

It’s not completely clear what causes IBS, sometimes referred to as spastic colon, but many experts believe that people with IBS simply have a more sensitive colon.  Things such as changes in your gut bacteria could have a greater effect on you than on others. Some experts also believe that the condition is a result of problems with brain-gut interaction, or how your brain and gut communicate with each other.

And, just like other conditions, such as overactive bladder, IBS has it’s own triggers.

While everyone’s trigger might be different, there are some common ones:

Foods in your diet:

Depending on your symptoms, different foods may be causing you problems. If you suffer from constipation, some foods, such as breads and cereals, processed foods, high-protein diets, and dairy products (especially cheese) can contribute to you symptoms. If you’re making more trips to the bathroom because of diarrhea, things like too much fiber, large meals, fried and fatty foods, and dairy products can be a problem. And for either symptom, you should avoid caffeine, alcohol, or carbonated beverages.

How you eat

It’s not just what you’re putting in your body that can have an effect on you, but how you eat can also impact your IBS symptoms. Eating too fast, or with distractions (like eating while you work or drive) can increase symptoms of IBS. Make sure to eat slowly and without disruptions.

Stress and Anxiety

Stressful life events, or even certain mental conditions such as depression, can bring on symptoms of IBS.  Learning ways to stay calm and manage stress can be helpful tools in managing IBS symptoms.

Hormonal changes:           

Many women with IBS often experience an increase in symptoms around their menstrual cycle (in fact, 70% of people who live with IBS are women). While you can’t prevent your menstrual cycle from happening, it may help to find ways to better manage your symptoms. Birth control pills can sometimes lessen the effects of your periods, which may also help with IBS symptoms.

Not enough exercise:

Simply put, exercise can keep things moving if you’re suffering from bouts of constipation. And, as a widely known way of banishing stress, it’s helpful in keeping you calm and stress free, which can eliminate another trigger of IBS symptoms.

Risk Factors For IBS

IBS is a common disorder affecting up to 20% of US adults. IBS is not an old person’s condition either – it strikes young, often occurring in people before turning 35). The majority of sufferers are female (70%).  While not proven to be hereditary, people who have had family members with IBS may be at a greater risk for developing the condition themselves. 

DiagnosingIBS

Diagnosis for IBS is typically done at a doctor’s office through blood tests. If you suspect you have IBS, make an appointment with your doctor to discuss your symptoms, and get tested for a diagnosis.

Treatment Options For IBS

Counseling

If you suffer from a lot of anxiety, or have experienced a traumatic event, speaking with a counselor can help you work through some of those feelings and may help ease your IBS symptoms in the process.

Diet Changes

Making some changes to what you eat can have a big effect for some people experiencing IBS symptoms. Try eliminating some of the problem foods listed above to see if you experience any relief.

Biofeedback

This technique involves training your body to have more control over your bowels, and has been proven an effective tool in managing IBS symptoms.

Mindfulness

Practicing mindfulness meditation has been shown to result in a reduction of IBS symptoms. Mindfulness meditation involves focusing on the present moment and has been thought to reduce stress and calm the mind.

Medications

Depending on your symptoms, your doctor may be able to prescribe medication to help you manage. Fiber supplements or anti-diarrheal medications can help manage constipation and diarrhea, and antidepressant medications may help you manage symptoms of stress and anxiety, which are common triggers of IBS. There are also medications specifically approved by the FDA to treat certain symptoms of IBS.

IBS can be a very painful and debilitating condition for some people, and while it is not life-threatening, it is a long term condition that should be treated. Speak with your doctor about your symptoms and work with him or her to find a treatment option that works for you.

NAFC Downloadable Resources - Tips & Brochures To Help Keep You Dry

Sarah Jenkins

Here at the National Association For Continence, we understand that people learn in different ways. While we see a vast amount of people visiting our website each month (over 80,000!), we know it’s not always easy to get information from a screen. And in some cases, having a physical tool can help you do things beyond just educate yourself – you can take notes, track progress, or remind yourself of important tips that can help to improve your bladder health.

That’s why our Resource Center is so important. We have a large variety of downloadable material and tools to help you on your journey to a Life Without Leaks.  Our resources cover a variety of topics, including Overactive Bladder, Bedwetting, Pelvic Organ Prolapse, Urinary Incontinence, and more.  We also have tips sheets for retraining your bladder, information on how to do kegels, bladder and bowel diaries, and a host of other tools available to you.

Check out the below materials in the NAFC Resource Center, and explore the entire library of offerings. 

NAFC Downloadable Resources:

 
 
 
 
 

Have some other resources you’d like to see on nafc.org? Send us a message. We’d love to hear your suggestions!

NAFC's Getting Started Guide For Managing Incontinence

Sarah Jenkins

 NAFC's Getting Started Guide To Managing Incontinence

If you’re new to this whole incontinence game, you may wonder how on earth you’re going to manage. Preventing leaks, keeping things clean, and navigating the isles of adult absorbent products at the grocery store are all probably top of mind right now, and rightly so. These are often the first steps people take when trying to manage bladder leaks.

But what comes next? And how do you even begin to tackle those items we just listed above?

We have you covered. NAFC has dedicated a whole section of our website to just getting started (which, to be honest, is often the hardest part). We’ve outlined the things you should do before you even make your first appointment to see your doctor (which you should do anyway, even if you complete all the steps we outline in our Getting Started Guide). 

 NAFC's Getting Started Guide For Managing Incontinence

This guide covers the basic steps, from how to keep a bladder diary, finding the right absorbent product, practicing pelvic floor strengthening moves, retraining your bladder or bowel, and a look at the vast array of options you have available to you for managing incontinence.

So take a look around, and start implementing some of these tips!  Begin with the first step:  finding an immediate way to manage your condition with absorbent products.   Then move on to the other helpful tips.

 

 

NAFC's Message Boards Provide A Safe Community For Incontinence Sufferers

Sarah Jenkins

 Join the NAFC Message Boards - An Anonymous Online Community For Bladder and Bowel Health

NAFC is a huge proponent of opening up about your incontinence. Talking with others about what you’re experiencing can be very therapeutic. But, we know that speaking openly about something like incontinence is not always so easy.

That’s why we created the NAFC message boards. It’s a anonymous community that let’s our visitors talk openly about their bladder and bowel health issues without judgment. Our community is filled with a supportive and caring community ready to help with questions, share stories, or just lend a comforting ear.

Don’t believe us? Check out some of the message board posts from our community:


“Thank you for your kind words. This is the first time that I’ve ever opened up to anyone. I’m really happy that I found a place where people are supportive and can truly understand what I’m going through.”
“Posting here is a difficult step for me to take. I am too young for this – my 24th birthday is this month. But since there are many others on this forum that share in incontinence, I will give it a try.” 
“I am a 35 year-old woman and I have been suffering from incontinence at bedtime all my life. It’s made my social/dating life very hard. I’ve turned down proposals, as I’m too ashamed to tell my partner why we can’t live together. I’m desperate to stop this so I can live a normal life and have a husband partner. I’m happy I found this community.”
“Bedwetting started for me as a teen. It was occasional and a huge source of shame for me. And to continue into adulthood was just humiliating. Hear to listen and talk with anyone else who cares to support each other with this issue.”
“Hello everyone. I’ve read some of your posts and its nice to not feel quite so alone with these sorts of problems.”

You are not alone. There are others out there who understand what you’re going through, and who are willing to listen and provide support.

If you’re struggling with incontinence, or any other bladder or bowel condition, or if you’re caring for someone who is, join our community. We’re all here for you. Because no one should have to walk this path alone.

 

 

NAFC's Many Resources For Managing Overactive Bladder

Sarah Jenkins

 NAFC's Resources For Overactive Bladder

Do you have overactive bladder? If you find yourself often running to the bathroom, you might be suffering from OAB – the urgent and frequent need to urinate. And, that urgent need may be difficult to stop, causing you to experience bladder leaks. Overactive bladder affects over 35 million people in the US, and can be a big disrupter to your everyday life. You may be struggling with this condition and wondering how to stop overactive bladder. But knowing more about the condition, what causes it, and how you can manage and treat it can make a big difference.

NAFC has tons of resources for patients living with overactive bladder. Check out the two listed below:

 

OAB Resource Center

The NAFC OAB Resource Center has videos about Overactive Bladder, first hand patient stories, and articles and brochures to help you understand the condition and what to do about it. It also has a collection of downloadable guides that can help you manage your condition. Download our OAB screener to evaluate the severity of your condition, get a tips sheet on bladder retraining, try the NAFC Bladder Diary, and get our tips for how to talk to your doctor about oab.

 

OAB Treatment Tracker

Do you feel like you’ve tried everything to treat your Overactive Bladder? NAFC created the OAB Treatment Tracker to help you determine your next best step in treatment options. Answer a few questions about your symptoms, the treatments you have tried in the past, and new treatments you may be interested in and receive a customized email outlining treatment options that may be a good fit for you. Best of all, you can print out the email and bring it with you to your doctor’s appointment to help facilitate a discussion about treatment options for OAB.

 

 

 

 

 

NAFC's Learning Library Can Help You Better Understand Your Bladder And Bowel Condition

Sarah Jenkins

 Watch Educational Videos From NAFC's Learning Library

Ever tried to learn about a complicated condition? It may seem like bladder and bowel problems are simple, but sometimes you need a little help understanding how things work, how to manage certain conditions, and the steps to take to avoid them.

That’s where the NAFC Learning Library comes in. Need some help knowing how to manage Overactive Bladder? We’ve got it. Want some tips on how to prevent bedwetting? Check out our video on that. Want to better understand nocturia, or learn how to insert a catheter? Want to learn more about kegels, or how to care for a pessary? We can help!

We’ve got the videos you need to help you along in your journey toward a Life Without Leaks.  Our collection of educational videos is growing all the time. Check out the NAFC Learning Library to better understand your condition and find ways to treat it.

Patient Perspective: Why I No Longer Mind Wearing Adult Diapers

Sarah Jenkins

Patient Perspective Fishing

I’m a 48-year old man, and I wear adult absorbent briefs. Every day, every night.

The problem started when I was around 40. I had always had some nighttime bedwetting issues, but they were rare and something I managed for most of my life with waterproof bedding.

But after I turned 40, I noticed I was having more and more frequent episodes at night. I tried wearing absorbent pads, but they still leaked, causing me to have to change my bed sheets almost 4 times a week.

Then the problem started happening during the day – I just couldn’t hold it in long enough to make it to the bathroom. I saw three doctors, and none of them could find a specific diagnosis for me to explain why I was having this problem.

I spent at least a year in denial – foregoing protection because I was embarrassed, but running to the bathroom more often than I wanted. I brought extra clothes with me to work and to social functions “just in case”, and soon, started to limit outings as much as I could because I couldn’t face the prospect of having an accident in front of my family and friends.

I finally realized that if I wanted any semblance of a normal life, I needed to use protection. I did my research and tried out several types of absorbent products to find something that worked for me. (Turns out I use absorbent briefs for day and night, although my nighttime briefs are thicker for extra protection.) 

It used to bother me that I had to wear “diapers” but now, I don’t think about it at all. I’d rather know I am protected vs. having an accident in public.

If you struggle with bladder leakage, just bite the bullet and find a product that works for you. In the end, you’ll be so relieved to know that “you’re covered”, and most people won’t even know you are wearing extra protection.

Mike W., Pensacola, FL

Patient Perspective: Roger's Story

Sarah Jenkins

 Roger's Story

I see it all the time – the ads for OAB, featuring these women who have to run to the bathroom every five minutes. They’re always women, right? You never see a man in these ads.  But I’m a man, and quite frankly, I feel a little left out.

I have OAB. I’ve lived with this condition for the past several years. I don’t have any known reason for it – I’ve never had prostate issues, am not on many medications, and rarely get bladder infections. But the urge to use the bathroom strikes me often and it’s pretty annoying. I usually make it in time, but have had the occasional leak. I’ve talked with my doctor about it but after he determined that my prostate was normal, he sort of brushed it off for a while – I don’t think he’s used to hearing a man come in with this type of problem unless it’s prostate related. But I finally was persistent enough that he prescribed some medication.

I experienced so many negative side effects from each medication I tried over the course of several months that I stopped them completely. It was then that my doctor finally recommended Botox. Yes, I had Botox injected into my bladder. And I have to say it was one of the best things that happened to me. It took almost no time to work, I didn’t need to use a catheter (I guess some people need to), and it lasted about 6-7 months before I had to go back in for another treatment.

It took some pushing on my part, but I was able to get treatment for my OAB. If you’re a man with this condition, don’t let it control you, and don’t believe there’s not a treatment available for you. The media and drug companies focus on women because it’s more common for them to have these types of issues, but men can have them just as easily.  And the medications and procedures work just as well for us.

Do something about your OAB. I’m so glad I persisted and got treatment for it. It helps me live a fuller life without the worry of overactive bladder.

Roger S., New York, NY

Patient Perspective: Debbie's Story

Sarah Jenkins

 Debbie's Story

My husband suffers from incontinence. He has for years. He never thought I knew, but I noticed when he would rush to the bathroom with a change of underwear. I watched as he consistently sought out the restrooms anywhere we went. And I definitely noticed the changed bed sheets when I would come home from work due to leaks the previous night. 

I wanted so badly to help him. To talk with him about it. To tell him that I understand and that it is ok. But how do you tell an ex army man whose very core is built on pride and being strong that you’re concerned about him wetting himself?

So, I stayed silent for years, and so did he, until finally he couldn’t anymore. We were out to dinner with friends when he had an accident, and had forgotten to bring along a spare pair of underwear. Panicked, he made up an excuse for us to leave immediately, and finally broke down in the car, telling me what I had known for years.

He was so ashamed, but I did my best to show him that I was supportive and didn’t think any less of him because of it. In the end, telling me was the best thing that could have happened, since I finally was able to help him.

We made an appointment to go see a doctor together, and he learned the many options available to him for treatment. He’s doing so much better now.

And though he still has some occasional leaks, he knows that he has me to lean on and doesn’t have to live with the stress of constantly trying to hide it.

I only wish I could have given him the courage to speak up sooner.
 
Debbie R., Omaha, NE

 

Patient Perspective: Brad's Story

Sarah Jenkins

 Brad's Story

My friends and I are close. Growing up in a small town, we’ve always been there for each other – to joke with, lean on in hard times, and to razz each other. We have a tight-knit group of 5 and they’ve been my chosen family since I was 12. It’s hard to believe so much time has passed since our early days, but here we all are.

I experienced incontinence after having my prostate removed in 2013. It wasn’t a fun thing to go through, and I certainly didn’t enjoy it, but the one thing that made it easier was that I knew to expect it – and that I wasn’t the only one.

You see, one of my buddies in our group, Joe, had also gone through something similar a few years back. He pulled me aside before surgery and told me that the worst thing that was going to happen was that I’d probably have some leaks – maybe a lot. It had happened to him for at least a year after his surgery and he said it was “hell “.

But he told me that the thing that had made it worse was not knowing it was coming, That was why he was talking to me – he wanted to me to know that I wasn’t alone. And, if it weren’t for his advice and pick-me-up talks, I don’t know how I would have gotten through that first year.

I’ve recovered well and don’t really experience the leaks anymore. But I still talk about it. Because that’s what we should all do with those we are close to. You never know who might benefit from your experience, or who might also go through something similar and just need a friend or to know they are not alone.

Don’t let your own embarrassment get in the way of opening up to your loved ones. I’m sure glad Joe didn’t.
 
Brad T., Auburn, AL

Patient Perspective - Teen Bedwetting

Sarah Jenkins

Patient Perspective - teen bedwetting

I’m sharing this story as an adult, but it is really about my childhood. I suffered from bedwetting when I was young and it lasted until I was almost a teenager.  I was lucky enough to have very supportive parents, but that didn’t stop the shame I felt every time it happened. It never felt like a big deal until I was around 7. Then I started getting invited to sleep overs, which were always very stressful for me. I was constantly scared of wetting the bed at someone else’s house and of my friends learning my secret. I started to turn down invitations simply because of my fear, and the problem began to effect me emotionally. Luckily, my bedwetting slowed down a lot after I was around 9, but I still had an occasional accident through age 12.

I’m not sure what I would have done I hadn’t had such wonderful parents to help me through it. They never made me feel bad about it, and always were as discreet as possible when helping me clean up after an accident. Their support took a lot of the pressure off of me, which I think would have only added to my problem back then. I now have a 3-year old myself, and, knowing that they could possibly experience prolonged bedwetting (after all – it is hereditary) shows me how stressful it can be for a parent. If you are a parent of a young child reading this, please take this one thing away:  Support your child, even if their problem has caused you countless sleepless nights, extra loads of laundry, and profound frustrations. I can tell you first-hand that it likely pales in comparison to the shame they’ve felt themselves. And the support and understanding you can give to them during this time will do wonders for their self-esteem and sense of wellbeing. They will remember it forever – I know I have.

Terry B., Salt Lake City, Utah

Need a solution for nighttime bedwetting? Try NAFC's Bedwetting Kit, available here.

Patient Perspective: Ethan's Story

Sarah Jenkins

 Ethan's Story

I am an adult bed wetter.  Those are hard words to say for a 52 year old man. I first started experiencing nighttime leaks when I was in my teens.  Just once in awhile. I’d laugh it off with my brother.  

But as I grew further into adulthood and it kept happening, I knew it was no longer a laughing matter. I found that the problem worsened when I went away to college and I took great pains to keep it hidden from my roommate.  I dared not buy protection from the stores near my campus for fear of someone seeing me, so I would drive an hour away just to pick up whatever absorbent pads I could find, which usually were not a great fit and didn’t do a lot to protect me.  I put blankets on my bed to absorb the leaks, but they didn’t help mask the odor.  

After college I got my own place, without roommates, so I wouldn’t have to worry so much about them finding out. I finally made the decision to speak to a doctor at age 30 – nearly 14 years after suffering from this problem on and off.  

While I still don’t know the reason I wet the bed, my doctor helped me find resources to manage the condition.  After trying several different absorbent products, I finally found one that fits well and is specific to nighttime use, so I rarely wake up anymore with leaks.  

I’ve also discovered that I’m not the only one out there with this problem – NAFC’s message boards have really helped me connect with others and sharing with them has been such a relief.  After years of embarrassment and isolation, I’m so thankful to have found help and to know that I’m not alone.

Ethan S., San Jose, CA

Patient Perspective: Larry's Story

Sarah Jenkins

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I’m 68 years old and I have incontinence. I’ve suffered a lot of setbacks over the years. I lost a finger in the army. I suffer from high blood pressure. And I have an old football injury that flares up regularly. But I have never suffered as much shame and humiliation as I have since I started experiencing incontinence.

It started innocently enough - a leak here and there. My doctor said it was due to prostate problems and gave me some medication to help. It did for a while, but then the leaks flared up again and I was forced to admit that this problem was not going away.

My first trip to the grocery store to purchase incontinence pads was a doozy. Standing there, looking at the wall of options was so intimidating. What do I choose? What size? How do I know it will fit? What if it doesn’t – can I return the bag? I had so many questions and no one to ask – after all, it’s not like men just talk about peeing their pants with each other all the time. Not to mention I kept looking over my shoulder to make sure that no one I knew saw me standing there. It would be so embarrassing to be “caught” in this situation.

When I finally got home, I started trying out the various absorbent products that I had purchased. I had bought 3 different types and gave each one a fair shot for a full day before making the call. Unfortunately none of them worked so I was back to the drawing board.

Fortunately, my wife found a company online that sold different products so I gave it a shot. I don’t know why I didn’t start with this option in the first place. They offered a free consultation so I gave them a call. The rep was so helpful and it was great having a guide to walk me through the different options, and also learn more about me, my condition and my lifestyle to help find something that would work best for me.

These days, I only use online services to order absorbent products. And, I’ve found great products that help me keep my leaks controlled, and my condition under wraps so no one is the wiser.
 

I still don’t love having incontinence, but it’s become such a normal part of life now that it doesn’t have the same hold on me as it once did. I didn’t envision this happening to me, but am happy to know that there are resources out there to help and products available that can make it more manageable. I feel free to live my life without fear of leaks and that is something to be really proud of.

Larry B., Seattle, WA

Patient Perspective: Nick's Story

Sarah Jenkins

 Nick's Story

In August of 2015, I underwent surgery to have my prostate removed.  I had been diagnosed with prostate cancer the year before and my doctor had been closely observing me since then. 

When it seemed that my cancer was growing more quickly than he liked, he suggested surgery.  “Afterall”, he said, “you’re only 63.  You can still have a long life without worrying about this.”

So, after a lot of research, I went for it.  I knew there would be complications afterward, but incontinence was not something that I had anticipated being that big of a deal.  I thought I’d probably have to wear diapers for a couple of weeks and that would be the end of it. 

Boy was I wrong. 

Nine months later and I was still having a difficult time making it to the restroom.  It was so embarrassing as a man to face this problem. I couldn’t do the things I wanted to because I was scared of having an accident or a leak, and I felt ashamed of the bulky diapers that I was forced to constantly wear. 

I finally made an appointment with a surgeon in May to discuss a sling procedure and will be having the procedure done next month.  I’m hopeful that this will be a solution for me so that I can get on with my life and get back to doing the things that are important to me. 

Nick W., Houston, TX

Patient Perspective: Samuel's Story

Sarah Jenkins

 Samuel's Story

How many of you men have incontinence? How many of you would admit if you did?  It’s a hard thing to come to terms with as a man. I know, because I’m one of the lucky ones who has been hit with this condition.

I had been noticing the need to use the bathroom more frequently for a while, but didn’t think much of it until I was on vacation with my wife a few years ago. We were in DC, walking around, being the typical tourists, when I suddenly felt the need to go. I wasn’t totally familiar with the area, and it was crowded, so it took me a while to find a bathroom. Unfortunately, it took me too long. I leaked – just a little bit, but enough to be able to tell. Luckily, I had a sweatshirt with me so I just wrapped it around my waist and told my wife we needed to head back to the hotel.

I was so embarrassed. She didn’t understand what had happened until we got back and saw that I needed to change my pants. And even then, it was hard for either of us to comprehend what had happened – I’m a grown man! I shouldn’t be wetting myself. We both brushed it off as a fluke and went on with the rest of our trip.

But a few weeks later at the gym, it happened again. And then again while doing some yard work at home. I started to feel like my body was betraying me. Why was this happening? I didn’t tell my wife that the problem had persisted until a few months later, when it was clear that I would need to get some help. She was so understanding and helpful. She did some research online to see what may be causing it and the treatment options available, helped me find a urologist to talk to, and even came with me to my appointment.

I’m happy to say that after talking to the doctor and getting treatment, I’m doing much better. Turns out I had an enlarged prostate so I’m on medication for that and it’s greatly reduced the need to run to the bathroom every five minutes, not to mention the leaks.

This has been a very humbling experience, but I’m glad that I opened up to my wife about it and that she was so understanding and helpful. I’m not sure I would have had the strength to get to a doctor about this had it not been for her pushing me along. Now, I’m leak free and am able to travel, workout and do pretty much what I want again without having to worry.

Samuel M., Cheyenne, WY

 

 

Patient Perspective: Molly's Story

Sarah Jenkins

 Molly's Story

OAB has long been a problem for me.  I’ve had gradually increasing symptoms since the birth of my second daughter 20 years ago. 

The sudden urge to go can strike at any time, but I’ve learned ways to manage it – I know my triggers (doing the dishes!) and have learned the hard way that I just need to carry around an extra change of clothes. 

For years, my various doctors dismissed these symptoms as nothing to worry about.  “It happens to many women your age”, or “This type of thing happens as you get older”.  This type of response was always really frustrating to me, but I trusted my doctor and felt that they knew best so never really pressed the issue.

I was prescribed medication once, but never really liked the side effects and at the time didn’t know about any alternatives. 

I finally decided it was time to take matters into my own hands when I nearly missed my daughter getting her diploma at her high school graduation because I was in the bathroom.  I got to work doing my own research on treatment options for OAB – turns out there are a lot!  I spoke frankly with my doctor about my wishes, and got a referral to a urogynecologist, who set me up with a simple procedure that I didn’t even know existed a year ago. 

Now, I rarely experience symptoms and I can’t believe I accepted this condition as normal for so long. 

Ladies – take your health into your own hands!  Demand treatment from your doctor and express your concerns.  You know your body better than anyone else - be your own best advocate! OAB is NOT normal! Do something about it and change your life for the better!

Molly R., Montclair, NJ